mind views of people who use mental health services 2009

8/13/2019 Mind Views of People Who Use Mental Health Services 2009

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Personalisation in mental health:Creating a vision

Views of personalisation, from peoplewho use mental health services


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1. Introduction

1. Introduction 2

2. Summary 5

3. Ideas about the process of 6personalisation

4. Identity and aspirations 9

5. Ideas about using personal budgets 12

6. Afterword 18

Contents

Views of personalisation, from peoplewho use mental health servicesWe have to stand as independent and to haveour own input, with our own needs-led agenda,coming from bottom up.Focus group participant

This report has been produced as part of a Mind

project Putting us rst. The project aims to ensuremore people experiencing mental distress havechoice and control over their care, through apersonal budget. People with experience of usingmental health services say they want to be incontrol of their lives, and of the support they need.The personalisation agenda and the introduction ofpersonal budgets is an opportunity to make this areality, and provide a much wider range of choicesthan simply a direct payment.

This report presents the ndings from four focusgroups for people with experience of mental healthservices, held during March and April 2009, andled by researchers from the Norah Fry ResearchCentre at the University of Bristol. The venues werein Yorkshire, Cumbria, the South West and London.Twenty-six people attended these groups (14 menand 12 women), including a range of people usinglocal Mind services, Mind members who are notcurrently using services, and a few people whohave experience of direct payments.

The aim of the focus groups was to explore howpersonal budgets could change peoples lives forthe better. This report will be helpful for bothstatutory, voluntary and private sector mentalhealth service providers, in creating a vision ofwhat personalised services might look like, andwhat we need to change to get there.

The focus groupsIn order to talk with a variety of service users in

different parts of the country, we held four focusgroups during MarchApril 2009. Each group washosted by a local Mind association, and the venueswere in Yorkshire, Cumbria, the south west and

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London. Altogether, 26 people attended thesegroups, 14 men and 12 women. The discussionswere prompted by a topic guide, but very much ledby the concerns and issues participants brought tothe groups. The discussions covered the followingtopics:

a) Goals and aspirations of participants.b) Discussion and information about personal

budgets and direct payments.c) A diary activity or small group discussion about

peoples everyday lives, and the things theywould like to do in their lives.

d) Sharing of ideas for personalised support.

All the discussions were recorded and transcribed,and the account in this report is based on aqualitative analysis of what people said. We areextremely grateful to all the participants for sharingwith us their expertise and their creativity, and wehope the following account does them justice.

How we ran the focus groupsPotential participants for focus groups wereapproached through four local Mind associations(LMAs).

Participants responded to an advertisement sentout for the project by LMAs. They lled in a replyslip, and responded directly to the research team.This was for reasons of anonymity, and gave thePutting us rst project an identity which wasdistinct from the LMA.

People who came to the group were interested indiscussing personalisation, and had made a positivechoice to attend.

Two of the groups included input from a carer,which gave an opportunity to hear about theeffects of personal budgets on carers, and alsoabout the supportive role they may play.

A variety of activities was carried out in eachgroup, which worked very well. The organisation ofservice user payments, consent sheets and otherorganisational matters all happened at the start ofthe meeting.

Part of a DVD produced by Yorkshire andHumberside Care Services Improvement Partnershipabout direct payments in mental health was shownat each group, and was successful every time inpromoting good discussion and ideas.

We also gave people diary sheets, to ll in duringthe group in pairs or small groups. This was to helppeople reect on the things they did now, and thethings they would like to do in their lives. Thefeedback from individual and pair diary activitieswas successful on two occasions, and resulted insome very creative thinking.

Participants in the focus groups often discussed thebarriers and particular problems facing them in the

process of applying for direct payments. They oftenneeded clear information and guidance about theseissues, before moving on to the positive choicesgiven by personal budgets.

In three groups, nearly all of the participants hadnot known each other before coming to thegroups, while the fourth group consisted largely ofpeople who were very familiar with each other andused to conducting group discussions. There wasplenty of peer support offered by people in the

groups, including exchange of contact details forlocal information.

Participants appreciated information given by theproject, which focused on what direct paymentsand personal budgets are. There was littleunderstanding of the latter, and the widerimplications of personalisation, and participantswere keen to ask questions and gain knowledge.

The length of each group was the same (twohours); however, the third group carried theirdiscussion on into lunch. We found the timingneeded to be exible, as, for instance, one verytalkative participant can lengthen the discussionquite dramatically.

The main planned goal of the groups was to gainservice user views on potential uses of DP/PBs formental health service users. On the whole, theformat of the focus groups was very successful inachieving this goal.

1. Care Services Improvement Partnership and the National Institute for Mental Health in England (2007),Direct Payments forPeople with Mental Health Problems .

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DenitionsPersonalisation: People with mental healthneeds having choice and control over their care,

with support and resources provided by thelocal authority.

Personal Budget: A clear, up-front allocationof money that a person with mental healthneeds can use to design and purchase supportto meet their social care needs

Individual budgets: Similar to personalbudgets, but incorporating a number ofdifferent funding streams as well as social care

money. The additional funding streams includedin the national pilot programme for IndividualBudgets included Supporting People and theIndependent Living Fund. Other funding

streams that could be included are: Accessto Work, Integrated Community EquipmentServices, and Disabled Facilities Grant.

Direct Payments: One of a range of optionsfor people getting a Personal Budget. Directpayments are cash payments paid directly tothe person, for them to buy their own support,rather than have their support delivered by thelocal authority.



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2. Summary

Personal budgets can help people access ordinaryactivities and pursue their goals in life. They arealso helpful in building condence andmotivation.

Personal budgets provide more exible support particularly when people are coming out ofhospital, back into the community.

A personal budget can be used to employ apersonal assistant (PA). But it can also be used topay directly for activities or support services.

Ideas for using personal budgets to meet mentalhealth outcomes include the following. Peoplewant to:

live independently in their own home, or havesupport to improve their home

go out, perhaps with a PA to keep themmotivated

have someone to conde in, so they could talkover problems

pay for a car, travel independently, or learn howto drive

pay for activities so they could keep upconnections with other people, socialise andmeet new friends

have support in maintaining close personal

relationships, and pay regular visits to familymembers or loved ones

pay for computers in order to communicatewith others, and have support to learn the skillsor to pay for internet connection

be able to afford holidays, or get support togo on a short break, to support their mentalwellbeing

pay for educational courses or materials,or have an assistant to help with studying,or motivation to study

contribute to society, and have support incarrying out volunteer activities, as well aspaid work

take out membership of a gym, or a sportsclub, so they could get physically t, andcombat the effects of medication

tackle mental health distress by choosing theirown alternative therapy or counselling

pool personal budgets, so they could keepgroup activities going, and have peer support.

Knowledge of direct payments is confused. Themove towards personal budgets is even morewidely misunderstood. Clear guidance andinformation for service users, care coordinatorsand local managers is urgently needed. MindsPutting us rst project will seek to addressthis need.

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3. Ideas about the processof personalisation

The current system for getting a provided service,or a direct payment, is seen as too bureaucraticand sluggish. It depends too much on gatekeepersto help with access, and this often does not workeffectively:

You have CMHTs (community mental healthteams) and AOTs (assertive outreach teams).They are what it says, they go out to see people

outreach. They go out, but its not always as good as the theory, because I nd myselfhaving to chase people to do things for me.So theyre not always reaching out, yourereaching them!

The fear about personal budgets was that thesystem will be just as bureaucratic and dense. Weexplained this was not the intention, and personalbudgets should be much more transparent, butpeople have simply not yet experienced it.

Nevertheless, when they heard about thepossibilities for personalised support under theircontrol, participants were very positive. As peoplesaid, creative solutions to mental health supportneeds often cost less than conventional services, aswell as being under the service users control andfar more effective:

If you actually get a prescription, its not fortablets costing 3 each that you take threetimes a day, its to go to the cinema, or thehealth club, thats a ver thats actuallycosting less money.

Confusions about personalisationSome participants in the four groups we ran hada degree of knowledge about the personalisationagenda, having attended previous meetings, or insome cases, having taken part in consultations.

However, in many places, there is still considerableconfusion about what personal (or individual)

budgets could be. At best, they are seen as a typeof direct payment, rather than an overarchingsystem for self-directed support. The word budgetis taken as synonymous with payment, and the

Experiences of accessing traditional servicesor direct payments are often confused andfull of problems.

Participants said there is an urgent need forpersonalisation.

They want a clear, transparent system fororganising support services.

The need for a new system toaccess supportIt is vital personal budgets are organised in a waythat is clear, open and easy to access. At themoment, participants experiences of access tosupport services are far from personalised. Theywere clear they want more individually tailored carepackages, and personalisation has a lot to offer,

but it doesnt exist for them at the moment.A major problem is access to care coordinators orsocial workers:

As far as social workers are concerned, when you need to see them, whos there for you?

A lack of access to services transferred over toparticipants feelings about personal budgets.There are many fears, as well as confusions,about how people would get access to a personal

budget. Some people had tried to be assessed fora direct payment, for instance, and the problemsthey identied were:

a) not having a care coordinatorb) too much paperworkc) and a system that is already overloaded andprofessionals who are burnt out.

Confusion about direct payments and benets wasalso aired; people want a new system that is undertheir control, but they feel a lot of the oldproblems might transfer over into personalbudgets.



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chief concerns are often about referral routes,and eligibility barriers. People are concerned thatpersonal budgets are yet another new system,imposed on top of the direct payments system.

Participants in all groups were well aware of thesupport needed both to access and to managea direct payment, and felt they would also needsupport with personal budgets. Particular barrierswere mentioned for people who have recoveredsufciently not to have services, and are no longerin touch with a care coordinator. Participants feltit was vital to get the process of personal budgetsright, so they could start to think more clearlyabout options relating to their individual supportneeds.

Will personalisation work?When the basic principles of a personalised systemwere explained, people in all four groups were verypositive about the ideas. People are particularlyenthusiastic about the underlying principle ofchoice and control lying in the hands of the serviceuser. However, they often mentioned other peoplewith mental health needs who would not be safein using a direct payment, and who may need help

in case they misused the money. In one group, amember had known someone who had a directpayment, but could not manage it well:

They need someone to help them manage it aswell. But it wasnt factored into the way they

got the money.

Participants discussed the kinds of safeguards thatneed to be in place, so people with mental healthneeds can manage risk for themselves, and havechoice and control in a safe environment. Their

own ideas about solutions and ways forward arelisted briey below.

Service users recommendationsfor the personalisation agenda

Quality of the care coordinatoror other supporter

When people got good support, they said it waslargely because of the individual care coordinator

or supporter. They said it is important to be able totrust the professional, and for the care coordinatorto treat the service user with respect. One persondescribed a care coordinator she trusts:

Well he believes me, he respects me, and hereally is trying to help me.

One of the worries about personal budgets is thepossibility of losing the already meagre contact

people have with these professionals. If personalbudgets are going to work, then people felt thiswould depend on the key players respecting andshowing belief in service users.

A streamlined system

Some people had experienced the bureaucracyinvolved in accessing direct payments and feltpersonal budgets need to be far simpler, and morestreamlined. In particular, one group talked about

the importance of having open, transparentinformation about the ways in which differentareas work. This followed a discussion aboutdifferent localities implementing personal budgetsin different ways:

What we need is a chart some people likecharts about how they can access theirbudgets. And what are the consequences ofbudgets, how theyre going to be appropriated,the legalities of these budgets.

Participants were aware that providers of servicesalso need to understand about personalisation.Unfortunately, those who had been involved inimplementation meetings about personal budgetsfelt confusions and complications had alreadyset in:

We are having meetings at borough levelwith regard to these budgets, and to me it isnot as simple as direct payments, its morecomplicated.

Support and brokerage

People in the focus groups were aware theywould need support in order to develop their ownplans, and also to assess and monitor how thingsare going:

Thats where you need support to assesswhether that thing is helping you, or

somebodys taking advantage of you because youre feeling quite vulnerable, because it doeshappen, very easily. Ive seen it, a lot.

This theme was not developed further, and wouldbenet from more exploration.

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Information and education for service users

There was much confusion and misunderstandingabout the implementation of personal budgets.One group talked in particular about the need for

more training and information. They felt serviceusers themselves need to be geared up andready for the changes. In fact, they said the focusgroup itself had been a start, but needed tobe followed up.

We should get people to come and educateus As far as the systems concerned, we do

parties here, and that could support peoplewith these mentors to give them guidance, sothey can get to learn certain issues, because

people are in the dark about certain things.

A passive list

As mentioned above, uctuating needs are a majorissue for service users themselves. A personalbudget should therefore not be xed and rigid,

with a set amount of money or support each week.Participants said the allocation of a personalbudget should be capable of being used as andwhen needed. People in one group suggestedkeeping people on a passive list in case theirneeds uctuate:

People should remain in the system, even iftheyre not actually needing care at that time.They should be on the books, so you can get acare coordinator.



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good physical activity, keeps him t, and helps himremain stable. However, in order to do somethinglike this, he may need transport assistance to getthere, and a personal budget could cover that cost.

Transition from mental distress tocommunity lifePersonal budgets can be particularly useful whenpeople leave hospital, to provide more exiblesupport. Participants felt the transition fromhospital back into the community was a crucialperiod of time, in which people can easily becomeunwell again. At this point, above all others, peoplesaid they need a safety net. Support should includeinformation about what is available, and continuedoffers of support, even if well at that point intime. Participants in one group said personalbudgets should allow you to pick up supportexibly, when needed:

People that have been discharged still haveneeds, and without support they can crashagain, so its actually nding a way of direct

payments, or individual budgets could plugthat gap

You feel a bit safer that you can sleep at night,and know that theres that bit of security therefor you.

Youve missed out a big gap out of your life.Its like youre in a box. You dont see whatsoutside that box for a period of time, so youneed regenerating and building up.

People talked about the problems of becomingreliant on medical expertise, and the consequentdifculties in pursuing their own lives afterwards.For instance, people talked about problems inbuilding relationships, and problems in how theycome across to other people. A common issuepeople experienced was isolation.

Participants said social workers and other carecoordinators cannot full this need on their own.Access to activities that promote social inclusion

4. Identity and aspirations

The goals people with mental healthproblems have in their lives are the sameas anyone else would have.

People want meaningful activities, friendsand close relationships.

Condence and motivation are key.

Participants are proud of their identity asmental health survivors.

Ordinary goalsThe people we met in the four groups told usabout goals and aspirations that are just like thoseanyone might have. They want to have fullledlives, nd meaningful activities, have friends,socialise and enjoy close relationships and security.These are the same things everyone wants, butwhich may sometimes be difcult to obtain withinthe mental health system.

A personalised approach to care may free peoplefrom stereotypes attached to traditional services.Participants generally did not talk about theirneeds, nor did they think in terms of services. Infact, in two groups, people mentioned that formalmental health services often carry a stigma, whichcan hold people back:

If you were motivated to go to a job interview yourself, sometimes you would not be askedabout your mental health problem, it depends.But if you do it through Links, your mentalhealth issues may be divulged. And withemployers, youve got all these issues.

Personalised support services can help peopleaccess ordinary activities, which they currently nddifcult to access. A personal budget was seen notalways as a way of funding ordinary activity but asa means of accessing support to give condence or

an extra push with motivation, in order to keep upa regular commitment. For instance, in one groupa man talked about a local rambling association,which he enjoyed very much. He said rambling is a

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and build up social networks and condence isneeded. A personalised approach will rely less oncare professionals and more on integrating supportinto daily life.

That is not to say care professionals will becomeredundant within a personalised approach.Care coordinators still have many roles, one ofwhich will be to enable and facilitate ordinaryactivities in the community, and to help educatelocal communities to ensure better understandingof the needs of those who have used mentalhealth services.

Condence and motivation

Having a personal budget and being in controlof the support you need is seen as an importantfactor in building condence and motivation.People associate mental distress with loss ofcondence, and the problems of keeping upmotivation when unwell. Therefore the key theysaw to getting good support was often abouthaving activities to build condence.

In one group, there was some agreementthat support from the family is important, and acarer who was present in one of the groups saidshe feels central in keeping up her daughtersmotivation to get out and do things. In anothergroup, a participant mentioned that her need forsupport in the winter months increases, since hermotivation wanes at that time, and at this pointextra sources of support are useful.

Motivation, however, is not necessarily somethingthat requires service supports. It is mainly aboutother people, and there was some discussionabout the difference between community lifeand service or hospital life. People in one groupsaid motivation chiey comes from having modelsaround you, and people who are doing thingsyou might want to do.

However, comparing your own life with those offriends may not always be helpful, and people saidyou do need to be well enough to maintain yourmotivation and focus. In particular, they said it ishard to get anything out of activities, socialisingor work when youre ill, since concentration isimpossible. The big issue here is the fact that

peoples conditions uctuate, and that bothcondence and motivation can grow at times, butdisappear at others. People therefore want supportthat will be under their own control, to call on

when they need it. The essential element of this isto be in charge of planning their own support.

Remaining well

It is vital that personal budgets take account of theuctuation in many peoples lives. Since peoplesneeds can uctuate, participants said problemsoften arise when the support stops.

When the social worker stopped, then the funding stopped, and I was left very much alone and Ihad to rely on my disability living allowance. Andit was very hard. Ive had to organise myself,and Ive found that the stress has caused quite

symptomatic my health has not been too bad,

but its not as good as it could be.This was described as a see-saw, in which peoplemanage ne with support, get better, and thenlose their support and went downhill. By contrast,people in one group talked about the need to havesupport when well, so you stay well. They said itwas important that people frame their needs asongoing, saying I have mental health problems,although Im better at the moment. Again, thiswas seen as an important role for personal

budgets, since they can constitute a safety net.This would involve having minimal support underthe control of the individual to call on as needed:

[People are] left in limbo until they crack, andthats why they need that money, so they canuse it to get someone in, even just to step in forve minutes so they can air their views.

Positive identity as a mental healthservice userWhen we asked participants in the groups abouttheir goals and aspirations in life, many people saidtheir goals and outlook on life have changed sincethey have experienced mental health problems.This result was not always negative, and severalparticipants said their experience has made themstronger and their lives, perceptions and goals arenow more balanced and satisfying than before:

Well I think when youve gone through anillness, your goals in life actually change a lot,but not necessarily for the worse.

The idea of a positive identity came up in everygroup, with one person talking about his role as an



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activist, another who attends planning meetingsfor services and several who are involved with therunning of their local Mind association. All theseroles give people a new feeling about what theycan contribute, and a new way of thinking aboutthemselves. In one group, people shared ideasabout a website they access, which helped thembuild a positive self-image:

I used to think of it as normal, but now I think Im just as happy now as I was before, but ina different way really. I nd that Im doingthings that I like doing now, with my time. It

takes a while to get to that stage, it didnthappen overnight.

In terms of personalisation, people felt theirsupport services should not rely on a passive, illness

model. When they need support, they do not wantat the same time to lose their sense of a positiveidentity. This is precisely what personal budgets cangive them. One person summed this upmemorably:

In the ght to be free to be who you reallyare what youre seeking is, like, a lovely life.

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People have creative ideas about how theywould use a personal budget to liveindependently, support social relationships, orgo out.

Independent travel and paying for socialactivities are both key needs.

Personal budgets can contribute to the cost ofcomputer use, skills or technical support.

Personal budgets can contribute towardsholidays and breaks to support mentalwellbeing, and provide opportunities to keepphysically t.

Personal budgets can support people toaccess learning, and to take part in volunteeractivities, as well as paid work.

Group activities are also important, and manyparticipants talked about keeping up peersupport.

Having presented the key messages about whatpeople want from the process of personalisedsupport, we now turn to the specic ideas theymentioned about how personal budgets mighthelp them in their own lives. The ideas that cameup in the different groups are all individual to

particular needs and interests. However, there aremany common themes, and they are grouped hereunder headings related to the goals in peopleslives.

Having your own place to liveHaving your own place to live was somethingpeople very much value, and those who did live intheir own at or house were adamant that theywant to maintain their independence. By contrast,

being cared for was seen as something veryrestrictive. In order to carry on living independently,people said they could use a personal budget tobuy in the PA support to help with budgeting, to

5. Ideas about using personal budgets

have general support at home, and to have apersonal assistant who would help with domesticactivities, making them more enjoyable andeffective.

If I had a personalised budget, I could actually pay for my own accommodation support,thatd be so much better.

An interesting point that came up in one groupwas that people can benet from learning how todo their own home decoration. A personal budgetcould pay for materials, as well as personal supportto learn and do DIY. They felt this would havemany pay-offs, as the home environment can helppeoples mood and general wellbeing:

So that could be something which couldbrighten up somebodys home situation. Eitherhelp to do it, or money for the materials.

Going outPersonal assistants are often associated with directpayments and personal budgets. Although PAswere not the only focus of the discussions we had,some participants said a PA could help them getout and do ordinary things, like shopping. In somecases, people said they needed the kind of PA whowould help set boundaries, so the PA sometimesneeded to be a bit tough.

But Id like someone to go shopping with me,my life would be so much better to have thatkind of assistance.

Talking over problemsThe point about having a PA is not just about thefunctional value eg, getting the shopping in. APA also provides human interaction. The quality ofpersonal assistance was important to people, andespecially the issue of a trusting relationship. Thisparticularly applied when people were aware theyneeded someone to insist on boundaries.

To advise you, and just to have a mentor to talkto, not like a counsellor, but just in case you



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have any health problems. My fathers just hadan operation and itd be nice to have

someone to talk to, like a support network.

Once a relationship has built up with a PA, there is

an element of friendship and trust. A PA issomeone to talk to, someone just to be there.People said they want PAs as a type of multi-purpose support. One person mentionedbefriending, and many people said theyd like toemploy PAs who keep them company.

In two different groups, people talked about theactual activities they could undertake with the PA.In this sense, PAs are seen very much as equals,people who can share interests with the personthey support, and can join in and enjoy thingstogether. One person had joined a stained glasscourse, and wanted to go along with a PA who hasa similar interest and skills. Another person said shewould like to go out to London, and do shoppingtogether with a PA. In all these ways, personalbudgets can help people achieve key mental healthoutcomes, through the support of personalassistance.

Travelling independently

In order to get out of the house, and to pursueactivities or meet other people, transport is oftennecessary. For some people, public transport causesextreme anxiety, and one person said she has tohave assistance in order to go on the local bus. Formany people the problems are exacerbated byliving in a rural location.

Those who do use public transport said it can bequite worrying, and they feel isolated or panicky ifthey have to catch the last train back. Evencatching the local bus in the morning can add topeoples anxiety, and cause them to missappointments or fail to turn up at work.

Some of the ideas for using personal budgetsrelated to independent car travel. For two people,this meant learning how to drive, and using abudget to help pay towards driving lessons.Another person suggested they could pool budgetsto fund a safe driving club, where people couldlearn and get condent in driving. Even for thosewho had a driving licence, there are problems in

keeping up a car, both nancial and relating to carmaintenance skills. A personal budget could beused to help learn these skills, or to hire someonein for regular car maintenance.

Keeping up connections withother peopleA personalised approach to mental health supportshould recognise that social connectedness is oneof the keys to good outcomes for service users. Inall the groups, people talked about the importanceof meeting others. This was often about ordinaryopportunities to socialise, but some people said itwas difcult to keep up these ordinary eventswhen they had lost condence. Therefore, having apersonal assistant might help in enabling people toget out and meet their friends.

More often, though, it was a combination ofnancial constraints, lack of social contacts, and

loss of condence that stopped people having asocial life. In one group, people talked a lot aboutthe example on the Yorkshire and Humberside DVDabout a woman who bought a dog with her directpayment. Walking the dog could be a good way tomeet other people.

Social connections are crucially important, andwere mentioned in several different contexts. Inparticular, the points below about computer use,and also about pooling personal budgets, relate

closely to the goal of communication and mutualsupport between friends.

Developing and keeping up personalrelationshipsKeeping up close relationships is vital to mentalhealth. In one group, this came up in the contextof needing support to actually establish arelationship, see each other regularly and have jointactivities. The person who brought this up said they

would need a PA whom they could really trust, andwho would be able to manage the support rolevery sensitively.

Many people mentioned the fact that their familymembers have moved away, and they are nolonger able to see them on a regular basis. This cancause some distress, and by contrast, one personsaid when he does see a family member, this reallyhelps his mood:

Its like when you see your daughter it lifts your spirits. Thats a family thing.

A personal budget could be used in different waysto support people to see family members. People



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suggested a PA could help someone travel to seetheir son or daughter, or in fact they could get helptowards the transport costs. In one case, a groupmember talked about the support and security herparents had always given her. Her father had nowmoved to Spain, and so it was far more difcultand costly to go and visit. Nevertheless, visiting herfather was exactly the type of short break sheneeds, and it helps with her mental health. Shesaid a personal budget could help her plan inregular trips abroad for family breaks.

Despite the importance of family and closerelationships in providing support, there were otheroccasions when people mentioned familyproblems. One person suggested using a personal

budget to educate the in-laws, who do notalways understand mental health issues. Anotherperson mentioned how difcult it is to keep up theparental role. A personal budget could be used tohelp a parent with the tasks they need to do fortheir children, having someone to visit the home tohelp with homework, with preparing meals, oreven helping children to get up and go to school.

Internet useHaving a computer clearly opens up opportunitiesat many levels, and can give good support topeople with mental health needs. There wasdiscussion in all of the groups about how personalbudgets could support people to use computers.In the main, people saw internet use as a wayof keeping up social contacts (through email ormessage boards), obtaining information andgetting social support:

It can be a good sense of social support, I go onthe internet a lot I sort of use it and it helps meout information-wise, and entertainment-wise.

If youve got a computer, at least you can senda message to your friend... so youre makingconnections, youre building a bridge.

In two of the groups, people discussed thepossibility of using personal budgets towardsenabling computer use. Individuals might pay forinternet access, or technical back-up for computermaintenance at home. Some people may not havea computer, and would benet from using apersonal budget simply to buy one and set it up.

Other people mentioned courses in IT skills, andparticularly the type of support course where

individuals could learn at their own pace. Apersonal budget could be used towards paying thecourse fees, or indeed having ongoing support inlearning skills for internet use. One personmentioned that computer use was absolutely vitalfor her, since she was dyslexic, and another groupmentioned a computer club. They discussed howpersonal budgets could be used to contributetowards a club, where computers could be boughtup cheaply and volunteers could help set them up.

Having a holiday or a short breakHolidays or short breaks were also felt to be animportant way of maintaining mental health andtackling mental distress. People said holidays arevital for their mental health, and something that isnot always possible to factor in to a limited budget.Personal budgets could be used to pay forassistance in order to go on holiday, or to organisea break.

Several people had experience of group holidaysand organised trips, and there were mixed opinionson those. In one group, members were very keento keep up the opportunities they had had forgroup outings, and spoke enthusiastically about

trips to the seaside or to the countryside. They saidthey would want to pool personal budgets to keepup these opportunities. Another person, however,had had experiences that were not so positive:

But its not everyones cup of tea, going awaywith a lot of sick people. And if you have to

share a bedroom with one of them, that canexacerbate your problems.

Studying and learning

In every single group, achievement of educationalgoals came up several times, including degree-levelqualications, art courses, IT and other moregeneral courses. Within a personalised mentalhealth system, many participants will take up moreopportunities for learning, which will help them toachieve mental health outcomes.

In most cases, people said they already haveexperience of studying, and want to go on toachieve further qualications. For instance, one

participant was completing an access course, andwants to go on to a degree course at university.Another participant talked about a textile courseshe would like to do, both to gain condence and



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also to gain skills and qualications for the futureand for her CV. A personal budget could be usedto pay for the course itself, and also possibly forsomeone to help her get to the course. Anotherperson mentioned a Masters course she wouldlike to enrol for. A personal budget could helpcontribute towards materials and books for thiscourse, which would really help her.

In general, education and study are seen as waysof pushing yourself and keeping busy, as wellas valuable opportunities to gain qualications.More than that, they are seen as potential socialopportunities and ways of getting out and meetingpeople, and thus address mental health needs andoutcomes in many ways. A large barrier people

faced was the problem of keeping up motivationon a regular basis:

Some mornings Ive literally got to pull myselfout of bed, because Im so heavily sedated. Inthe summer its not so bad, because its brightand sunny outside, but in the winter when itscold [I] dont want to get up.

The ways in which a personal budget could helpto overcome this barrier included having a taxi inthe winter months to get to college, or providing

additional support. This could be either a PA tocome to the course with the individual, or someoneoutside the course to go over material and helpwith study at home.

Several people who came to the focus groups hadroles as advocates, activists or volunteers. Specictraining courses could help them in their roles. Oneperson mentioned a certicate in advocacy, forinstance. Others talked about specic courses theywould like to develop, almost as a group project.In one group, people suggested personal budgetscould help to buy in a facilitator or a tutor to helpthem with drama:

Its the different category of acting, its how you portray yourself...this money theyre givingus now, could bring a drama teacher, to teachus drama, so we can learn to express ourselves.

Working and volunteeringPersonal budgets can be a very good way of

providing exible support for employment, and thegoal of contributing to society was very importantwithin our group discussions. More than oneperson had a part-time job, and feels this is very

valuable. Participants suggested a personal budgetcould be used for support both to get a job and tokeep a job (eg, a PA to go into the workplace withyou, someone to help you manage work tasks andkeep a written record of what you need to do, or a

job coach to keep up contact with you after youvestarted a job). These are all supports that could becovered by Access to Work funding, and the factthey are mentioned here indicates that personalbudgets may be required to ll a gap in support forpeople who enter part-time work, or require moreexible or longer-term support.

However, paid work is not always felt to be theonly desirable goal, and in one group in particular,there was an interesting discussion about work and

the changing nature of the work scene in thecurrent recession. People talked about the pressureto work, and the societal push to get a job, whichcould impact negatively. It was also felt keeping uppaid work depends on the current state of yourmental health, and this creates difculties for manypeople.

It depends on how well you are at the time.Some people might be going, I want to get a

job, other people might be wanting to get out

of bed. It could be anywhere on that spectrum.By contrast, the focus group participants mostlysaid they themselves prefer voluntary work, part-time jobs, and having a variety of activities duringthe week. On the whole, the key to this wasenjoyment. Many people mentioned opportunitiesfor volunteering, and felt volunteering should bevalued in the same way as paid work. It was oftenfullling for people, and enabled people tocontribute to society.

[Volunteering] keeps me motivated. I was ondrugs for 12 years of my life. Im off drugsnow... And I helped to do the caravan and

stuff, and Ill do any jobs, any jobs, me. Whatkeeps me happy, motivated, off the drugs and

getting my life in order.

In another group, someone mentioned a volunteerrole he had in supporting others with mentalhealth needs to take part in a walking club. Heneeded help to set this up, to carry out risk

assessments, and someone to be a mentor for himto keep up this role. In all these ways, a personalbudget can help to support people in managingvolunteer roles.



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Other people talked about particular plans theyhad for managing their own lives, and forcontributing to society. In some cases, a personalbudget could help them set up their own business,or turn a volunteer scheme into a workopportunity.

One person had attended a womens group for along while, which was staffed and supported byvolunteers. A facilitator had managed to changethis, so service users could themselves carry out thework needed to provide refreshments and run thegroup:

Id been going there from the womens groupfor about 14 years, then when Jane came in,

she said to employ people there instead ofhaving just voluntary workers. She said she was

sure we could do tea, coffee and sandwichesand do the food hygiene certicate.

With creative thinking, people said a personalbudget could help them with a set-up grant orsome business advice, and enable them to turnvolunteering or service provision into businessopportunitie

Keeping up physical tnessPhysical tness was seen as a particular goal bymany people in the focus groups, who feel theseactivities can contribute to achieving better mentalhealth.

Two people mentioned using a personal budget tobuy membership of a local gym, several peopletalked about a rambling club, and others discussedthe possibility of taking up cycling. A personalbudget would be useful not only to buy a bike, but

also to become condent in riding it on the road.Some members had previous experience of acycling club, where they had learnt how to ride andto maintain their bikes. This was something whichthey felt would be valuable to keep up through apersonal budget.

In more than one group, people also talked aboutthe negative impact mental distress can have onphysical health. In particular, the effects ofmedication can mean unwanted weight gain, andso activities geared towards combating this arevaluable:

Ive put on 60 kilos since I started on themedication. If the exercise bike now I would

go on that, if I could afford an exercise bikethen I would use that, and I could keep theweight down For me, a very good pair of

shoes is a good thing, like you can walk in,like good running shoes, for support.

A personal budget could be used to buy theexercise bike or the equipment you need to gett. However, it could also be used to get supportfor keeping up tness activities. People wereaware that if youre on medication, you dontalways feel like exercising, because you feel tired,and it could help to have a PA to encourage youto go walking, and provide company when outwalking or running. Another person said shewould use a personal budget to go to a Weight

Watchers group, and yet another talked about ahealthy eating course, and using a computer tond recipes which she could manage herself.The area of physical tness was one in whichpersonal budgets can be deployed very creatively,in seemingly straightforward and simple ways,and achieve important benets for peoples lives.

Directly tackling mentalhealth distress

All the ideas mentioned above for using personalbudgets relate in different ways to supportingpeople to keep well, tackle mental health issues,and deal with potential mental health problems.They are about recovery, and leading an ordinarylife with ordinary goals, despite ongoing mentalhealth needs. However, a few things suggestionswere more explicitly directed towards dealing withmental health issues.

One group mentioned the possibility of buyingin counselling support with a personal budget,and another person suggested they could use apersonal budget for massage. One person said hewould choose hypnotherapy, and people agreedalternative therapies can be very useful on anindividual basis, even if the evidence shows they donot make any physical difference. They still feel itwas valuable to have the choice, and being incontrol of your own path to recovery is in itselfvaluable:

You can get drawn into this little therapeutic

world, that everyone subscribes to... And alsothey can take advantage of you if youre a bitvulnerable, thinking theres this magic, x-it,

guru person out there, whos going to do it for



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you. And theyre not; youve got to do it yourself.

Being part of a group and getting

mutual supportJust because people are entitled to choice andcontrol over the way they meet their own personalneeds, this should not mean losing group supportor valuable services. Indeed, people can choose tohave a group service as part of their individuallydesigned support plan. The nal message from ourfocus groups is that personalisation should notdestroy the possibility of peer support and groupactivities. Participants talked about poolingbudgets, in order to fund group activities, mutualventures or peer support. Particularly because thefocus groups were taking place in local Mindassociations, many of the participants alreadybeneted from strong group structures, servicesand activities provided by Mind.

In many cases, participants feel they themselveswere a part of the provision, and they act asvolunteers within their local Mind associations.One person is a trustee, others volunteer tosupport new members, and one group has a

caf run by members. Many people echoed thesentiment expressed in the following remarks:

I think the volunteers here seem to be like a bigfamily, dont they?

Coming to Mind, helping the staff. It makes mefeel good, it makes me feel better. I know Im

safe here, I know Im looked after, I know people will listen to me.

There was a strong feeling that individual choicesshould not result in isolation, and many peoplesaid they also want group services to be available.Indeed, the focus groups themselves are evidenceof the enjoyment people have in meeting withothers and sharing their experiences. Peoplesuggested in one group that they could pool theirpersonal budgets in order to fund a peer supportgroup; in another, a poetry-writing group andperhaps also to go on holidays together.

As self-directed support becomes more readilyon offer throughout the country, providerorganisations will have to learn how this will affectthem. As we heard from these focus groups,providers are not going to become less important,but will need to take up new roles, helping peopleto organise themselves, and supporting peeradvocacy. The people we talked to want to worktogether with providers, to bring about more

choice and control for all mental health serviceusers.



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Since the four focus groups for the Putting us rstproject, other people have contacted us, and wehave had input from a panel of service users. Thereremains much confusion and misunderstandingabout the nature of direct payments, let alone theimpact of personalisation on the mental healthsystem, and these misunderstandings naturally leadto fear on the part of individual service users.When professionals themselves do not understand

the basic facts about personal budgets, it is hardfor service users to have the condence to expresswhat they would really choose for themselves.

Further, we have had contact from a creative artsproject, which provides a space, facilities andsupport for a group of artists with mental healthneeds to come together on a regular basis. Thisgroup, like many other support groups includinglocal Mind association services, is facing problemsabout its core funding, because people who use

the project do not necessarily have eligible needsunder the Fair Access to Care (FACS) criteria. It isclear that services, groups and co-operatives that

6. Afterword

exist already will need to learn how to respond tothe new arrangements for personal budgets, bycosting out their services on an individual basis,and by attracting service users who wish to buy into the group project, whilst preserving the openaccess policy which so many services feel to beimportant. This should not be impossible toachieve.

Participants in our focus groups said they wanteda good supportive network to fall back on whennecessary, but one that would not control andregulate their lives. A personal budget wouldenable them to achieve control over their ownlives. This in itself is strongly connected with theconcept of recovery and the last word on this willbe left to a participant in one of the groups:

Its about recovery and self-management. Becauseyour social worker, your support worker, theyrenot going to be there all the time, so you haveto devise a plan thatll help you reach and attainyour goals.



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Putting us First is a Mind project, managed byNorah Fry Resource Centre, and supported byHealth and Social Care Advisory Service, Universityof Central Lancashire and Southampton Centre forIndependent Living. The Putting us First project isfunded by the Department of Health.

Southampton Centre For Independent Living919 Rose Road

Southampton SO14 6TET: 023 80330982w: www.southamptoncil.co.uk

HASCAS1113 Cavendish SquareLondon W1G 0ANT: 020 7307 2892w: www.hascas.org.uk

UCLANUniversity of Central Lancashire

Preston, Lancashire PR1 2HET: 01772 201 201w: www.uclan.ac.uk

Mind would like to thank Pauline Heslop and ValWilliams of Norah Fry Research Centre, Universityof Bristol, who wrote this guide as part of thePutting us First project. Thanks also to the fourlocal Mind associations where the focus groupstook place, and others who have contributed theirideas and suggestions.

We are particularly grateful to the service userswho gave us the benet of their expertise, theircreative ideas and open-minded suggestions abouthow they would use personal budgets. We trustthe personalisation agenda will progress, so thesepeople can benet, and have choice and controlover the support they need to pursue their goals.

We would also like to thank the consultants whoworked with us, Tina Coldham from the Healthand Social Care Advisory Service, Helen Spandlerfrom the University of Central Lancashire andMaureen Harris from Southampton Centre forIndependent Living, for their contribution.

Acknowledgements

MindMind has been speaking out for better mentalhealth for 60 years. We work in partnership witharound 200 local Mind associations to directlyimprove the lives of people with experience ofmental distress.

Mental distress affects people from every ethnicbackground and walk of life one in four peopleexperience mental distress at some time in theirlives and a third of all GP visits relate to mentalhealth.

Mind believes everyone is entitled to the care theyneed in order to live a full life and to play theirfull part in society. Our vision is of a society thatpromotes and protects good mental health for all,and that treats people with experience of mentaldistress fairly, positively and with respect.

Mind is an independent charity supported by yourdonations. We campaign to inuence Governmentpolicy and legislation, work closely with the mediaand are the rst source of unbiased, independentmental health information via our publications,website www.mind.org.uk and phone serviceMind infoLine 0845 766 0163.

Norah Fry Research CentreNorah Fry Research Centre was established in1988, and 2009 marks a celebration of 21 years ofcontinuous research activity. Its principal interestsare in the area of social and policy-related research.The Centre aims to make a positive difference tothe lives of disabled children, young people andadults and works with disabled people, includingpeople with mental health support needs, tosupport them in taking part in research anddevelopment.

Who we are



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For details of your nearest local Mind associationand of local services, contact Minds helpline,Mind info Line on 0845 7660 163, Monday toFriday 9.00am to 5.00pm. Speech impaired or deaf

enquirers can contact us on the same number (ifyou are using BT Text direct, add the prex 18001).For interpretation, Mind info Line has access to 100languages via Language Line.

Mind1519 Broadway,London E15 4BQT: 020 8519 2122F: 020 8522 1725w: www.mind.org.uk

Registered charity number 219830Registered in England number 424348

Mind 2009

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mind views of people who use mental health services 2009

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